Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that word. I think it even rhymes with the word, “corruption.” Oh, I don’t exactly know why, I can’t give you a single reason, but I do know that in my 50 years of business experience I never had a high regard for them. I can’t remember ever hearing about a good lobbyist.
After making several trips to Washington on behalf of my favorite childhood cancer organization, and talking to politicians on the “Hill,” making appointments, getting the run around, and a host of other obstacles, I had an experience that totally changed my mind.
The last time I visited Capitol Hill, I worked with my daughter and one of her potential “business partners” who happened to have an office in DC near the Congressional offices. Mary (I changed her name to protect her identity), met us at her office early in the morning. I liked her business-like demeanor right away. We discussed all the meetings we would be having with the Representatives over coffee where I learned that she had a child who was a cancer survivor, then off we went! It was like a whirlwind! We walked and covered the Cannon Building, The Longworth Building, The Rayburn Building and the Capitol Building and met with 7 different offices. All the meetings went well and we accomplished more than I ever expected. Mary was the reason it all went so well. She had everything lined up and knew all the ins and outs of maneuvering through the halls and back ways of Congress. Every move seemed to be orchestrated.
On my way home, it dawned on me that Mary, my daughter’s “business associate” who whisked us through Congress so easily, was too good to be true, she had to be some type of undercover lobbyist and I never saw it coming! She never acted like a lobbyist. She was bright and cheery, not dark and sleazy. She was pleasant and everyone we met knew and respected her. They even acted like they enjoyed seeing her. Can you believe it? I think we were working with a lobbyist and I never realized it!
I asked my daughter if she knew and she sheepishly smiled and said yes. Knowing how I felt about the “L” word, she explained that Mary was sort of a lobbyist and that she had set all the appointments for us and that without her we would never been able to do what we did that day. She went on to say that Mary had previously worked for a Congressman and a Senator and spent years on the hill.
Since then, I started looking at lobbyists in a different light. I discovered that some of the largest hospitals and charities spend hundreds of thousands on lobbyists. The National Association of Children’s Hospitals spent over 3.1 million dollars on them last year while CHOP (Children’s Hospital of Philadelphia) and Nationwide Children’s Hospital each spent over $400,000. I’m sure it’s safe to assume that most of this money was spent to improve the various institutions and not for childhood cancer. Nothing is wrong with that. We want the best hospitals we can get, right? I also learned that the National Breast Cancer Coalition and Susan G Komen For The Cure together in 2011 spent over 1.2 million dollars on lobbyists and I think we can all see where they have benefitted from their investment. FYI, did you know that the Defense Department funds a large amount of breast cancer research? This year alone the DOD will spend $120 million on breast cancer.
In order to show up in the government reports, an organization must spend $10,000 or more in lobbying efforts. In my investigations, I could not find any strictly childhood cancer organizations (St. Baldricks, Alex’s Lemonade Stand, Ronan Thompson, etc.) last year that spent anything on lobbyists. If he were here, TV’s Dr. Phil has a famous line that he would insert into this conversation about now, “So, how’s that workin’ for ya?” Well, Dr. Phil, it’s not working!
No wonder it’s so difficult to get legislation introduced for childhood cancer and even more difficult to get it passed! Our community is not competitive compared to other groups seeking help from the Federal government.
We need to find a way to lobby for childhood cancer issues and legislation.
First, we need to have a way to pay a professional lobbyist either through a co-op, coalition, PAC or some other way. Relying on volunteers to do our lobbying as we have done in the past is just not going to work. The intentions are great, and we need to keep doing it, but we also need to be represented there day in and day out. Two or three times a year will not cut it.
Second, we need someone who is neither a “D” or an “R.” We need someone to be an “K,” for Kids and their childhood cancer causes. We need someone who will work independent of any single organization and for the benefit of children fighting cancer, regardless of which side of the aisle introduces the legislation or which organizations benefit one way or the other.
Third, we need someone who has a vested interest. Ideally, like Mary, we should have someone who has lived the painful journey of having a child with cancer or losing one because of it. We need someone that can be recognized as the voice of our children. That person would have enough passion to spread the fire through the halls of Congress until something is done.
I firmly believe that until we fill this void, we will continue to get less than 4% of the NCI budget for research, we never will have a Pediatric Oncologist on the Board of the National Cancer Institute, and our legislation will languish and die just like the way the Carolyn Pryce Walker Conquer Childhood Cancer Act of 2008 died so quickly in appropriations in 2009.
Where is our Lone Ranger? We need to be rescued, and soon!
Hmmm… I wonder if Jonathan Agin owns a horse?
Author: Joe Baber
Editor’s Note: Not much has changed it the ten months since this piece was written. Without the help of any type of professional lobbyist, the Gabriella Miller Kids First Research Act passed the House, Senate and was signed by the President, but the bill passed by getting various organizations from all corners of the pediatric universe to write and call their Senators and Representatives. This takes time and energy away from various organization’s normal missions to accomplish such a feat. Now, we are trying to get it appropriated and we still do not have a professional lobbyist. If ever we needed someone as our professional lobbyist to get inside and work the politics and get this appropriated, it is now! We find ourselves still…Looking for our Lone Ranger.
Four-Square Clobbers Cancer 
Here’s the thing, why are there so many local (some who go national) pediatric oncology organizations out there? I get it. People, having been through a terrible tragedy, want to make a difference and honor the ones they love. But as a result, we have become splintered. I am hopeful that each of these groups come together – as one voice – so that people can hear our whole community. The fact is, prior to something like CAC2 (3 years now?), there were individuals – parents, the hospitals and CureSearch doing the begging, lobbying, making a difference work. They, along with the COG, were able to get a study done (was that under Clinton?) that showed how much money was needed by pediatric oncology research (to find cures.) Money was promised, a schedule made to increase the budget… Sadly, a series of political events occurred – administration change, war, etc. – and the budget, instead of increasing, got slashed year after year. Meanwhile, another war started by the individual institutions to get money for their own programs. Families need to feel empowered – in so many ways. As to the question of going to “professionally paid” lobbyists and fundraisers? I think it is a cautionary tale. The CureSearch Board voted to do that and brought in the “pros.” I feel like they lost their mission and have disconnected from the very families that could support them. Professional lobbyists may know who to call for an appointment – but the message needs to come from us. It is the kids and their stories that show people we need to do more. Kids aren’t statistics (think Dr. Varmus at NCI – he loves to say pediatric cancer is “rare”) and their journeys and secondary effects that they suffer from are different from adults in so many ways. People can’t ignore the kids – even if they want to look away – as long as we, the families, don’t let them become statistics. We need to have continued family involvement – with guidance. I don’t think we should pay somebody else to do our job; it doesn’t work either. To that point, just looking at “institutions” like the American Cancer Society, who continually use photos of our kids in all their ads, we need to realize they aren’t doing us any favors (budgeting under 4% to ped. cancer) because they go by statistics to justify their budget. We do need to be united to be taken seriously. How can we do that? I can only hope that our passion and love for our kids gets us to the table and the job done. Politics in our universe has place at the table.
Well spoken! I want “one of our own” (a parent) to lobby for our children. I am not advocating for a professional lobbyist, I am advocating to, somehow, financially support one of our own to be the key lobbyist in DC 24/7. So far,I have not seen any cancer parent that is financially able to do this full time in Washington. Through organizations like CAC2 that represent ALL the childhood cancer groups, maybe in the future, we can find a way to do this. I am not advocating that we lessen the families, kids and parents involvement but increase it as well. Children’s Cause for Cancer Advocacy does a great job of advocating, educating, and organizing advocacy events I would like to see that expanded even more.
The whole time I was reading this, the two people that kept coming to mind are Tony Stoddard and TattooTom. They would both do an excellent job for theses kids.
Joe, thanks for the plug. I have my horse ready…… http://www.jonathanagin.com I ride it up to the hill all the time. Keep pushing the mission.
Let’s keep working together. We are the right path. Just think about the Civil Rights Movement or the Disabilities Movement. Stakeholders make the best advocates!! Let’s Keep Moving Forward!!!
Thank you! I had a daughter who passed away from ALL. I have been to DC one time with an organization & never realized what you just said. Puts a whole new perspective!